Melbel
05-08-2012, 11:04 PM
Thank you to those of you who signed the petition linked in my thread about my son's hospitalization. If anyone else is willing to sign a petition seeking to have the Lyme Disease testing/treatment guidelines updated by a balanced panel that includes doctors who treat chronic Lyme disease and eliminates conflicts of interest (the panel that wrote the current guidelines has been shown to have significant conflicts of interest based upon ties to insurance industry, patents, and big pharma), we would greatly appreciate it!
http://www.lymedisease.org/petitionscript/index.php
Why we are asking for you to sign the petition:
Our son, and countless others are not timely diagnosed with Lyme Disease in large part due to the narrow guidelines issued by the CDC. Although the guidelines were intended solely for surveillance criteria, virtually all health care providers routinely rely upon the guidelines for diagnostic purposes. Doctors fail to follow the CDC's advice that the disease should be diagnosed on clinical grounds and not by unreliable laboratory tests. The Lyme disease tests are inaccurate up to 60% of the time per a recent Johns Hopkins study. Meanwhile, insurance companies have also denied coverage for long-term antibiotic treatment relying on these guidelines as justification.
The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one. This is precisely what happened to our son.
The CDC concedes, on its website, that the actual number of Lyme Disease cases are 8 to 12x more than reported. Countless patients remain undiagnosed and untreated. Considering how debilitating and even life threatening Lyme Disease can be, this is simply unacceptable.
In addition to CDC surveillance criteria causing very low numbers of reported cases, most state health agencies are not well informed and may not report Lyme disease for various reasons, including the disease may have been acquired elsewhere. Most doctors mistakenly interpret low or no reported figures to mean Lyme disease in their state is rare or absent.
As outlined in the documentary Under or Skin as well as Connecticut Attorney General Richard Blumenthal's antitrust investigation, there were serious flaws in the Infectious Diseases Society of America’s (IDSA) process for writing its 2006 Lyme disease guidelines. Blumenthal’s findings include the following:
• The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
• Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
• The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;
• The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus”;
• The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
• The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.
Thank you all for the continued support.
More on the Lyme Controversy:
http://members.iconn.net/~marlae/lyme/featurearticle03.htm
http://www.columbia-lyme.org/patients/controversies.html
http://www.underourskin.com/news/cdc-foia-delays-get-under-skin-film-producers
http://www.lymedisease.org/petitionscript/index.php
Why we are asking for you to sign the petition:
Our son, and countless others are not timely diagnosed with Lyme Disease in large part due to the narrow guidelines issued by the CDC. Although the guidelines were intended solely for surveillance criteria, virtually all health care providers routinely rely upon the guidelines for diagnostic purposes. Doctors fail to follow the CDC's advice that the disease should be diagnosed on clinical grounds and not by unreliable laboratory tests. The Lyme disease tests are inaccurate up to 60% of the time per a recent Johns Hopkins study. Meanwhile, insurance companies have also denied coverage for long-term antibiotic treatment relying on these guidelines as justification.
The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one. This is precisely what happened to our son.
The CDC concedes, on its website, that the actual number of Lyme Disease cases are 8 to 12x more than reported. Countless patients remain undiagnosed and untreated. Considering how debilitating and even life threatening Lyme Disease can be, this is simply unacceptable.
In addition to CDC surveillance criteria causing very low numbers of reported cases, most state health agencies are not well informed and may not report Lyme disease for various reasons, including the disease may have been acquired elsewhere. Most doctors mistakenly interpret low or no reported figures to mean Lyme disease in their state is rare or absent.
As outlined in the documentary Under or Skin as well as Connecticut Attorney General Richard Blumenthal's antitrust investigation, there were serious flaws in the Infectious Diseases Society of America’s (IDSA) process for writing its 2006 Lyme disease guidelines. Blumenthal’s findings include the following:
• The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
• Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
• The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;
• The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus”;
• The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
• The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.
Thank you all for the continued support.
More on the Lyme Controversy:
http://members.iconn.net/~marlae/lyme/featurearticle03.htm
http://www.columbia-lyme.org/patients/controversies.html
http://www.underourskin.com/news/cdc-foia-delays-get-under-skin-film-producers